Why I’m thankful for my daughter’s MRSA

“What time is surgery today?” Ellie, age 12, croaks. She hasn’t opened her eyes yet, but she knows she’s headed to the operating room … again. It may be the fourth surgery this month, maybe the fifth. We don’t know. What we do know is our routine has changed from soccer carpools and homework battles to twice-weekly trips to the operating room, where the orthopedic surgeon will slice open my baby girl’s thigh and attempt to wash out the deadly bacteria accumulating in her right femur and knee joint.

We’re trying to learn the new routine and master a new language. The vocabulary is demanding. There are procedures, medications, devices and acronyms. Most are scary — wound vacuum, PICC (peripherally inserted central catheter), clinical failure of vancomycin, Methicillin-resistant Staphylococcus aureus (MRSA).

The only one who seems to have any answers is the pediatric resident. Unfortunately, he’s nearly always wrong.

Our trip into this alternate reality started on Ellie’s first day of seventh grade.

“My knee hurts,” she says.

Probably too much soccer and cross-country running, we think.

The next day, her right knee has swelled to the size of a small pumpkin. OK, that’s a little alarming. We visit the local emergency room. They suggest an ACL tear, send her home with a knee brace and order an MRI the next day.

When we show up for the MRI, Ellie is definitely not herself. She’s quiet and compliant. She’s clearly in pain.

A few hours after the MRI, her fever spikes to 105. She’s talking gibberish. I’m not waiting for the MRI results. We bundle her up and speed back to the hospital.

The doctors suspect Lyme disease. They order x-rays and blood work. By 3 a.m., we’re tucked into a room on the pediatric floor.

A MRSA diagnosis

The next morning a nurse asks if the doctor has talked to us about MRSA.

And then after days of waiting, everything speeds up. We’re told, “Your daughter needs surgery.” Only later do I appreciate what a true blessing it is not to have to think about what’s best for Ellie. It’s not an elective procedure, and we don’t have to choose who is going to care for our daughter. The doctors — orthopedic surgeons, infectious disease specialists, hospitalists — have taken over.

For two weeks, it looks like the MRSA is winning. The intravenous antibiotics and the repeat surgeries are not working as intended.

Through it all, Ellie sleeps. We worry. We learn the hospital routine. We update family and friends on CaringBridge.com. I research alterative treatments.

One morning the infectious disease doctor pulls us in and tells us he’s decided to switch Ellie’s antibiotic. The infection should be responding, but it isn’t. Clinical failure, he calls it.

The new stuff — Daptomycin — works. Ellie turns the corner. She perks up a tiny bit. Over the next few days, she manages to post an update on her CaringBridge site and Skypes with her seventh-grade classmates.

There are triumphs and tears. Just before her sixth surgery, the anesthesiologist hands her the needle and lets her push her sedative, handing her control and a goal.

A few days later, she begs for morphine before her stitches are removed. Maybe it’s a good sign that she’s alert enough to feel pain.

Going home after MRSA

Three weeks later, we leave the hospital. She’s 25 pounds lighter, tethered to a PICC line to continue IV antibiotic treatment and stuck in a wheelchair.

But she’s on the mend. And I’m grateful. I’m so glad she’s healed. There are scars. The giant gash on her right leg is a permanent reminder of the eight surgeries. Small pinprick scars from the PICC lines dot her arms. But what lies behind those scars is who Ellie has become.

Ellie fights. And she learns. She scowls at the physical therapist who tells her she’ll walk with a limp if she doesn’t work at her rehabilitation. She becomes vigilant about MRSA and hooked on hand sanitizer. She studies her MRIs with her orthopedic surgeon, watching as her femur remodels and the golf-ball-size hole left by the bacteria closes.

The sympathy from her middle school clique extends only so far. She grows up — much faster than we hoped. She finds solace in academics, and the child who was determined to fight her illness becomes the young woman determined to help others. Medicine, she decides, is her future.

It’s been just about six years since Ellie was diagnosed with MRSA. There were ups and downs — a second infection, a ravaged immune system and the invisible scars only a medically fragile child knows.

But while the bacteria ate away at her flesh and bone, it also nurtured a fierce resiliency. Ellie is in her second year of pre-medical studies at Rhodes College in Memphis. Her determination and academic record helped her land a research fellowship at St. Jude’s Children’s Research Hospital, where she studies the interactions between drugs and natural products.

Yes, MRSA sucked, but it’s grafted into Ellie’s history and future. It weakened her immune system but strengthened her spirit.

Learn more about quality and safety and how Boston Children’s is working to prevent infections.